@MEAssociation can you please clarify why you promote Instagram accounts of peeps who claim exercise was key to their recovery? EXTREMELY dangerous! Exercise intolerance is the most crucial criterion to diagnosis of M.E. Thats why we fight GET to be removed from NICE guidelines.
@MEAssociation a number of people have been very hurt by your endorsement. It is critical for you to send the message that exercise DOES NOT make people with M.E. better. If I saw that as an outsider, I’d assume the rest just didn’t try hard enough to exercise to get better.
I am really upset with @MEAssociation . Of all people, they should know better than promote recovery stories based on exercise. Read more here instagram.com/p/B_FEpEijcsG/… 
@MEAssociation this is what you’re supporting. Should we all do graded exercise therapy then??
1. @MEAssociation can you look me in the eye and tell me that promoting a profile of someone who posts things like this, to your community of M.E. patients harmed by GET, isn’t condoning the extremely damaging premise that exercise makes people with M.E. better??
2. Isn’t it making a mockery of our fight against the PACE trial and our fight to remove graded exercise therapy from the NICE guidelines because WE KNOW it makes patients worse??
3. How can you act as an organisation that’s supposed to protect patients form GET harm when you are actively promoting a profile of someone who is posting videos and exercise tips for M.E. patients?
4. Has this young lady got any biomedical knowledge whatsoever of the physiological damage that happens when M.E. patients exercise?
5. Can you not see how thousands of newly diagnosed will see this and think that exercise will make them better when we know how many have been permanently disabled due to trying to exercise their way out of M.E. ?
6. I am a fitness professional with many years of experience of prescribing exercise as well as a biomedicine graduate and I wouldn’t dream of giving fellow M.E. patients exercise tips because I know how devastatingly damaging it is.
7. We cannot control what people without qualifications post for masses to see but you, as someone who is supposed to protect patients from harm, can control what you promote on your own social media and you can control the message that all new M.E.
patients must know:
patients must know:
8. exercise is the absolute worst thing you can do to recover. NO ONE who had real ME recovered with exercise, if they did, they did not have ME.We are not all different. This argument is null and void.The absolute most crucial criterion to diagnosis of ME is exercise intolerance
9. If someone recovered and is NOW able to exercise, this must be made absolutely crystal clear and their posts must come with a warning if they are shared to the patient community.
10. Claiming that exercise was key to recovery makes a complete mockery out of our suffering and continues to promote the stigma that the rest of us still sick, simply didn’t try hard enough to get better. ME Association- SHAME ON YOU.
I can easily now say, based on their reply to me on Instagram, @MEAssociation does not represent me, the community and does not have patients’ interests at heart. They choose to promote the stigma that some people got better with exercise. I am disgusted
